Patient - clinician - researcher meeting days
Since 2017, the SIRIC has been working to develop the application of health democracy in a research setting accompanied by its health democracy group composed of patient representatives, clinicians and researchers.
Amongthe concrete actions of the group, the exchange days bringing together patients, researchers and clinicians figure prominently. Some have become annual events, such as the metastatic breast cancer days or the days dedicated to uveal melanoma, two flagship pathologies of the 2018-2022 SIRIC. Others are also regular but in a different format. This is the case for the meetings dedicated to health data.
Metastatic breast cancer
Since 2019, under the impetus of patient representatives, SIRIC's health democracy group and the inter-associative collective 13/10 have been inviting patients to a day totally dedicated to metastatic breast cancer. The disease is discussed in all its dimensions: medical, societal and research.
A recording of these days is available as well as a survey on the mental burden carried out by the collective and a compilation of some reliable information sources.
Uveal melanoma
In association with SIRIC's health democracy group, Manuel Rodrigues has been mobilizing the uveal melanoma team (ophthalmologists, surgeons, oncologists, radiation therapists, researchers ...) every year since 2018 to give feedback to the patient community on clinical trials, research work and to answer questions. While uveal melanoma is a rare disease, these meetings bring together nearly 100 people each year.
Watch presentations from the past few years and discover resources to go further.
My health data
While health data is at the heart of research, its use outside of a care setting can sometimes be a cause for concern for patients. The health democracy group wanted to shed light on this subject through a series of webinars aimed at patients and their families, and then organize a symposium with all the players to discuss the issues surrounding the second use of health data. All of these events are available on the SIRIC website.
